The article looks into the case involving Fabiano Antoniani, who, following a major road accident, was left tetraplegic. Marco Cappato drove him to a Swiss clinic where Mr. Antoniani took his own life by self-administration of lethal pentobarbital sodium. Cappato was put on trial, but the Italian Constitutional Court urged the Parliament to decriminalise assisted suicide in extremely serious cases. From a comparison with other European countries, approaches range from restrictive (banning both active euthanasia and assisted suicide), to entirely permissive. An intermediate approach only entails a ban on active euthanasia. It would be desirable to uniformise the diverse national statutes on a European level, which would make it possible for everyone to receive assistance towards ending their suffering, with limitations to incurable cases to be medically verified, and at the end of a path designed to ensure that patient freedom of choice is upheld at all time.
Ce livre présente les réalités de la mort aux XIVe et XVe siècles, abordant les coutumes funèbres, le cérémonial funéraire et les représentations macabres. Il aborde également une réflexion sur la signification des gestes et des discours autour de la mort.
BACKGROUND: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables.
AIM: To pilot test the data set to check acceptability, comprehensibility and feasibility.
DESIGN: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods.
SETTING/PARTICIPANTS: Adult cancer patients and staff in palliative care units, hospices and home care.
RESULTS: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items.
CONCLUSION: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.
Healthcare professionals are often confronted with situations that increase their levels of stress and emotional fatigue, particularly in hospice or palliative care, because of direct contact with dying patients that can contribute to risk of burnout. Psychological support for doctors and nurses is crucial to voice any anxiety or distress experienced.This pilot study aimed to evaluate the effectiveness of a short-term psychotherapeutic group implemented for doctors and nurses of a Hospice in southern Europe. Burnout and alexithymia were measured at the beginning and at the end of a psychotherapeutic group conducted with the Photolangage method which encourages sharing of emotional experiences by the medium of a photo.Significant differences between pre- and post-evaluation were observed in the scores for alexithyimia (measured with TAS-20) and burnout (measured with MBI). This is suggestive of the effectiveness of this group intervention in reducing risk of burnout and increasing awareness of emotions experienced during daily work at the hospice.
BACKGROUND: End-of-life care practices in long-term care facilities (LTCFs) are the focus of growing attention in Europe, due to rapidly increasing number of older persons living in LTCFs. The knowledge about end-of-life discussions or existence of written advance directives in the European LTCFs is scarce. This study's aim is to investigate the prevalence of written advance directives and their sociodemographic associates, among recently deceased LTCF residents, in six European countries.
METHODS: Data from the European Union-funded PACE database were collected from 322 LTCFs in six European countries in 2014. The assessments were performed by using two questionnaires designed for LTCF administrative staff and for staff member.LTCFs were selected within each country by using proportional stratified random sampling procedure. Facilities with certain types and sizes were included from each country.Multilevel multivariate analyses were performed to evaluate associations between written advance directives and selected predictors.
RESULTS: In total, 32.5 % of the 1384 deceased LTCF residents had a written advance directive with a range from 0% to 77 % between countries. The proportion of the most common advance directive, 'Do not resuscitate in case of cardiac or respiratory arrest (DNR)', varied correspondingly from 0% to 75%.LTCF type (OR 2.86 95% CI 1.59 to 5.23) and capability of expressing at the time of admission (OR 3.26 95% CI 2.26 to 4.71) were the independent predictors for advance directive. Residents living in LTCFs where physician was available were less likely to have advance directive compared with residents from LTCFs where physician was not available.
CONCLUSION: Extensive differences for prevalence of written advance directive exist between countries among older LTCF residents in Europe. Timely and appropriate response to LTCF resident's health needs and preferences efforts advance care planning.
Many studies on spiritual care in palliative care are performed in the US, leaving other continents unexplored. The objective of this systematic review is to map the recent studies on spiritual care in palliative care in Europe. PubMed, CINAHL, ATLA, PsycINFO, ERIC, IBSS, Web of Science, EMBASE, and other databases were searched. Included were European studies published in a peer-reviewed journal in 2015, 2016, or 2017. The characteristics of the included studies were analyzed and a narrative synthesis of the extracted data was performed. 53 articles were included. Spiritual care was seen as attention for spirituality, presence, empowerment, and bringing peace. It implied creative, narrative, and ritual work. Though several studies reported positive effects of spiritual care, like the easing of discomfort, the evidence for spiritual care is low. Requirements for implementation of spiritual care in (palliative) care were: Developing spiritual competency, including self-reflection, and visibility of spirituality and spiritual care, which are required from spiritual counselors that they participated in existing organizational structures. This study has provided insight into spiritual care in palliative care in Europe. Future studies are necessary to develop appropriate patient outcomes and to investigate the effects of spiritual care more fully.
Background: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors.
Objectives: Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication.
Design: Cross-sectional survey.
Settings: Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n=290).
Participants: Nurses and care assistants (n=1680) completed a self-efficacy scale and were included in the analyses.
Methods: Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level.
Results: The proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30-2.65]); nurses (compared to care assistants) (1.75 [1.20-2.54]); completion of higher secondary or tertiary education (respectively 2.22 [1.53-3.21] and 3.11 [2.05-4.71]; formal palliative care training (1.71 [1.32-2.21]); working in direct care for over 10 years (1.53 [1.14-2.05]); working in a facility with care provided by onsite nurses and care assistants and offsite physicians (1.86 [1.30-2.65]); and working in a facility where guidelines for palliative care were available (1.39 [1.03-1.88]).
Conclusion: Self-efficacy towards end-of-life communication was most often low in Italy and most often high in the Netherlands. In all countries, low self-efficacy was found relatively often for discussion of prognosis. Palliative care education and guidelines for palliative care could improve the self-efficacy of care staff.
Since the early 1990s, long-term care policies have undergone significant transformations across OECD countries. In some countries, these changes have responded to the introduction of major policy reforms while in others, significant transformations have come about through the accumulation of incremental policy changes. This book brings together evidence from over 12 years of care reforms to examine changes in long-term care systems occurring in OECD countries. It discusses and compares key changes in national policies and examines the main successes and failures of recent reforms. Finally, it suggests possible policy strategies for the future in the sector.
Origine : BDSP. Notice produite par IRDES qR0xBJl8. Diffusion soumise à autorisation
This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation
Despite their growing incidence over the last decades, national days of mourning received curiously sparse attention throughout social sciences and death studies. This study investigates the 327 national mournings observed across European countries between 1989 and 2017 in terms of their national variance, temporal dynamics, typology of events that led to their declaration, and victimology. Drawing on a Durkheimian-inspired conceptualization of national mournings as political rites of solidarity and reconciliation, this article finds empirical support for the thesis that the frequency with which European countries declare national mourning is a negative function of a societyâ€™s level of social integration.
The Italian Parliament has recently approved a law on informed consent, advance directives and advance care planning. The law also deals with health care proxyand health care decisions for minors and adults who are not able to give consent. The Italian law arrived quite late in comparison with other European countries. After several years of debate on the need to approve such a law, the focus has now shifted to the assessment of the legislative provisions and their impact on clinical practice. In this article, the authors firstly offer an overview of the findings from the empirical research regarding the use of the different legal tools in the field of intensive care medicine; secondly, they present the tools now provided by law no. 219/2017 particularly with regard to the decision-making processes in the Intensive Care Unit (ICU); thirdly, the authors offer a comparison between the new Italian law and other European legal orders, with special referenceto France, Spain, Germany and England. The aim of the article is to assess the degree of innovation of the law vis-à-vis the previous framework.
Le mouvement des hospices anglais a vingt-cinq ans, mais il est en fait enraciné dasn une tradition de soins qui perdure et qui est destiné à ceux qui souffrent, aux malades, aux mourants.
[Début de l'article]
L'objectif premier de cet essai historique vise à dégager les principaux courants internationaux qui ont influencé le façonnement du système de santé publique actuel du Québec. Pour cela, l'étude remonte jusqu'au mouvement dit de police médicale au Siècle des lumières en Europe occidentale et s'arrête avec l'apparition du concept de médecine globale au Québec lors de la réforme du système de santé des années 1970.
[Début du résumé]
Ce document est l'intervention de Monsieur Jean-François Mattei, Ministre de la Santé, de la Famille et des Personnes Handicapées, lors du colloque soins palliatifs "Pratiques innovantes, besoins nouveaux en soins palliatifs et accompagnement : expériences européennes et canadiennes", le 17 décembre 2002 au Forum des Halles.
Background: Opioids, antipsychotics and hypnotics are recommended for comfort care in dying. We studied their prescription during the last 3 days in residents deceased in the long-term care facility (LTCF).
Methods: In a retrospective, cross-sectional survey in Belgium, England, Finland, Italy, the Netherlands and Poland, LTCFs, selected by proportional stratified random sampling, reported all deaths over the previous 3 months. The nurse most involved in the residents' care reviewed the chart for opioid, antipsychotic and hypnotic prescription, cause of death and comorbidities. Multivariable logistic regression was performed to adjust for resident characteristics.
Results: Response rate was 81.6%. We included 1079 deceased residents in 322 LCTFs. Opioid prescription ranged from 18.5% (95% CI: 13.0-25.8) of residents in Poland to 77.9% (95% CI: 69.5-84.5) in the Netherlands, antipsychotic prescription from 4.8% (95% CI: 2.4-9.1) in Finland to 22.4% (95% CI: 14.7-32.4) in Italy, hypnotic prescription from 7.8% (95% CI: 4.6-12.8) in Finland to 47.9% (95% CI: 38.5-57.3) in the Netherlands. Differences in opioid, antipsychotic and hypnotic prescription between countries remained significant (P < 0.001) when controlling for age, gender, length of stay, cognitive status, cause of death in multilevel, multivariable analyses. Dying from cancer showed higher odds for receiving opioids (OR 3.51; P < 0.001) and hypnotics (OR 2.10; P = 0.010).
Conclusions: Opioid, antipsychotic and hypnotic prescription in the dying phase differed significantly between six European countries. Further research should determine the appropriateness of their prescription and refine guidelines especially for LTCF residents dying of non-cancer diseases.
BACKGROUND: Nursing homes are among the most common places of death in many countries.
AIM: To determine the quality of dying and end-of-life care of nursing home residents in six European countries.
DESIGN: Epidemiological survey in a proportionally stratified random sample of nursing homes. We identified all deaths of residents of the preceding 3-month period.
MAIN OUTCOMES: quality of dying in the last week of life (measured using End-of-Life in Dementia Scales - Comfort Assessment while Dying (EOLD-CAD)); quality of end-of-life care in the last month of life (measured using Quality of Dying in Long-Term Care (QoD-LTC) scale). Higher scores indicate better quality.
SETTING/PARTICIPANTS: Three hundred and twenty-two nursing homes in Belgium, Finland, Italy, the Netherlands, Poland and England. Participants were staff (nurses or care assistants) most involved in each resident's care.
RESULTS: Staff returned questionnaires regarding 1384 (81.6%) of 1696 deceased residents. The End-of-Life in Dementia Scales – Comfort Assessment while Dying mean score (95% confidence interval) (theoretical 14–42) ranged from 29.9 (27.6; 32.2) in Italy to 33.9 (31.5; 36.3) in England. The Quality of Dying in Long-Term Care mean score (95% confidence interval) (theoretical 11–55) ranged from 35.0 (31.8; 38.3) in Italy to 44.1 (40.7; 47.4) in England. A higher End-of-Life in Dementia Scales – Comfort Assessment while Dying score was associated with country (p = 0.027), older age (p = 0.012), length of stay 1 year (p = 0.034), higher functional status (p < 0.001). A higher Quality of Dying in Long-Term Care score was associated with country (p < 0.001), older age (p < 0.001), length of stay 1 year (p < 0.001), higher functional status (p = 0.002), absence of dementia (p = 0.001), death in nursing home (p = 0.033).
CONCLUSION: The quality of dying and quality of end-of-life care in nursing homes in the countries studied are not optimal. This includes countries with high levels of palliative care development in nursing homes such as Belgium, the Netherlands and England.
La réflexion a été menée à partir d'un corpus de plusieurs siècles accessible par le site de la réunion des musées nationaux (RMN). Elle se concentre sur une technique et un espace géographique : la peinture européenne. Il apparaît que représenter la mort a captivé les artistes à toute époque. Peindre la mort est une constante. Derrière cette permanence des différences fondamentales permettent de dégager deux séquences historiques.
BACKGROUND: An ageing population in the EU leads to a higher need of long-term institutional care at the end of life. At the same time, healthcare costs rise while resources remain limited. Consequently, an urgency to extend our knowledge on factors affecting efficiency of long-term care facilities (LTCFs) arises. This study aims to investigate and explain variation in technical efficiency of end-of-life care within and between LTCFs of six EU countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. In this study, technical efficiency reflects the LTCFs' ability to obtain maximal quality of life (QoL) and quality of dying (QoD) for residents from a given set of resource inputs (personnel and capacity).
METHODS: Cross-sectional data were collected by means of questionnaires on deceased residents identified by LTCFs over a three-month period. An output-oriented data-envelopment analysis (DEA) was performed, producing efficiency scores, incorporating personnel and capacity as input and QoL and QoD as output. Scenario analysis was conducted. Regression analysis was performed on explanatory (country, LTCF type, ownership, availability of palliative care and opioids) and case mix (disease severity) variables.
RESULTS: 133 LTCFs of only one type (onsite nurses and offsite GPs) were considered in order to reduce heterogeneity. Variation in LTCF efficiency was found across as well as within countries. This variation was not explained by country, ownership, availability of palliative care or opioids. However, in the 'hands-on care at the bedside' scenario, i.e. only taking into account nursing and care assistants as input, Poland (p = 0.00) and Finland (p = 0.04) seemed to be most efficient.
CONCLUSIONS: Efficiency of LTCFs differed extensively across as well as within countries, indicating room for considerable efficiency improvement. Our findings should be interpreted cautiously, as comprehensive comparative EU-wide research is challenging as it is influenced by many factors.
BACKGROUND: The provision of high-quality palliative care in nursing homes (NHs) is a major challenge and places demands on the knowledge and skills of the staff.
AIM: This study assesses the palliative care knowledge of staff in NHs in Europe.
DESIGN: Cross-sectional study using structured survey Setting/participants: Nurses and care assistants working in 322 representative samples of NHs in Belgium, the Netherlands, England, Finland, Poland and Italy. Palliative care knowledge is measured with the Palliative Care Survey. Scores on the scales range between 0 and 1; higher scores indicate more knowledge.
RESULTS: A total of 3392 NH-staff were given a questionnaire, and 2275 responded (67%). Knowledge of basic palliative care issues ranged between 0.20 in Poland (95% confidence interval (CI) 0.19; 0.24) and 0.61 in Belgium (95% CI 0.59; 0.63), knowledge of physical aspects that can contribute to pain ranged between 0.81 in Poland (95% CI 0.79; 0.84) and 0.91 in the Netherlands (95% CI 0.89; 0.93), and knowledge of psychological reasons that can contribute to pain ranged between 0.56 in England (95% CI 0.50; 0.62) and 0.87 in Finland (95% CI 0.83; 0.90). Factors associated with knowledge were country, professional role and having undertaken formal training in palliative care.
CONCLUSIONS: Knowledge of nurses and care assistants concerning basic palliative care issues appears to be suboptimal in all participating countries, although there is substantial heterogeneity. Education of nursing staff needs to be improved across, but each country may require its own strategy to address the unique and specific knowledge gaps.
Background: A recent international consensus panel identified 13 major indicators to assess the level of integration between oncology and palliative care. We examined these indicators among European Society for Medical Oncology (ESMO) Designated Centres (ESMO-DCs) of Integrated Oncology and Palliative Care (PC) and determined the centre characteristics associated with greater integration.
Methods: This is a preplanned secondary analysis of a recent survey to characterise the structure, processes and outcomes of the palliative care programmes at ESMO-DCs. We assessed the level of integration using 13 major indicators. We calculated two Palliative Care and Oncology Integration Indexes consisting of all 13 indicators (PCOI-13, range 0-13) and 9 of the 13 indicators (PCOI-9, range 0-9), with a higher index indicating greater integration.
Results: The survey response rate was 152/184 (83%). Among the 13 major indicators, interdisciplinary team was most likely to be achieved (95%), while early referral to palliative care (median time from referral to death >6 months before death) was only present in 24 (20%) of ESMO-DCs. The median PCOI-13 was 7.8 (IQR 6.4-9.6) and the median PCOI-9 was 6 (IQR 5-7). The presence of dually trained palliative oncologists was associated with higher PCOI-13 (median 8.4 vs 7.0; p=0.01) and PCOI-9 (median 6 vs 5; p=0.03). Non-tertiary hospitals generally had higher PCOI-13 (median 8.6 vs 7.2; p=0.01) and ESMO-DCs outside of Europe had higher PCOI-9 (median 7 vs 6; p=0.03).
Conclusions: Assessment of the level of integration at ESMO-DCs with PCOIs highlighted strengths, areas for further development and how double-boarded palliative oncologists may promote integration.